Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

How can I find a neuroendocrinologist?

Mon, 12/22/2008 - 10:03

Hello Everyone.....

My daughter was diagnosed with juvenile myoclonic epilepsy a year ago. She had her first tonic clonic about 4 weeks ago, and had another one early this morning. I am tracking them and find the TCs have ocurred either during ovulation or at the beginning of her period. She is currently on Keppra, Depakote ER, Klonopin and Ativan prn and is still having breakthrough seizures. I am POSITIVE there is a hormonal connection and would like to find a neuroendocrinologist to evaluate her. Does anyone know how to find one or know of one anywhere within a days drive of Pittsburgh, PA?

God Bless.....

Michele

Comments

Re: How can I find a neuroendocrinologist?

Submitted by confused924 on Wed, 2009-03-11 - 19:16

Jess_smom --

We were in contact with each other on your other blog and I just came across this blog by you.  My daughter (15) was also diagnosed with JME.  How is Jess doing?  Have you been able to find a neuroendocrinologist?  Has this helped her?  Please keep us posted.  I've been checking this sight daily to keep up to date with your daughter -- I know she was going through a rough patch.

 

Jess_smom --

We were in contact with each other on your other blog and I just came across this blog by you.  My daughter (15) was also diagnosed with JME.  How is Jess doing?  Have you been able to find a neuroendocrinologist?  Has this helped her?  Please keep us posted.  I've been checking this sight daily to keep up to date with your daughter -- I know she was going through a rough patch.

 

Re: How can I find a neuroendocrinologist?

Submitted by Jess_sMom on Wed, 2009-03-11 - 19:33

Hi Confused....

Sorry it has taken me so long to update, but things with Jess have continued to get worse. Because she wasn't responding at all the the meds that usually work well with JME, Dr. Holder (our Neuro) ordered some genetic testing which was done in December. Much to our dismay and heartbreak, the results came back as a 99% certainty that Jess suffers from Lafora Disease, which is one of the fatal progressive epilepsies. We are currently awaiting biopsy results to confirm what the bloodwork has told us. Actually, as I type this, I am with Jess at Children's....we've been in since Monday. Dr. Holder has been in contact with one of the 2 world renowned experts in this disease, and he's been kind of guiding her. We are going to try a new drug, but ultimately, there is no cure for this dreaded disease. I encourage you, and anyone who might read this post, to visit the website www.chelseashope.org for information. The more the word is spread, the better chance there is to find a cure. There are currently 2 promising therapies, but because Lafora is an "orphan" disease, there is very little funding for research. The more who know, the better.

Michele

Hi Confused....

Sorry it has taken me so long to update, but things with Jess have continued to get worse. Because she wasn't responding at all the the meds that usually work well with JME, Dr. Holder (our Neuro) ordered some genetic testing which was done in December. Much to our dismay and heartbreak, the results came back as a 99% certainty that Jess suffers from Lafora Disease, which is one of the fatal progressive epilepsies. We are currently awaiting biopsy results to confirm what the bloodwork has told us. Actually, as I type this, I am with Jess at Children's....we've been in since Monday. Dr. Holder has been in contact with one of the 2 world renowned experts in this disease, and he's been kind of guiding her. We are going to try a new drug, but ultimately, there is no cure for this dreaded disease. I encourage you, and anyone who might read this post, to visit the website www.chelseashope.org for information. The more the word is spread, the better chance there is to find a cure. There are currently 2 promising therapies, but because Lafora is an "orphan" disease, there is very little funding for research. The more who know, the better.

Michele

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.